Stevie Lewis went to see her GP for help with insomnia after struggling with the pressures of starting up a business consultancy. The 41-year-old from Bristol hoped she’d be given something to help her sleep.
‘But to my surprise the doctor announced that I was on the edge of clinical depression — what my mother’s generation would have called a nervous breakdown,’ she recalls.
And instead of sleeping tablets, she was given a prescription for paroxetine, a type of antidepressant known as a selective serotonin reuptake inhibitor (SSRI), thought to work by increasing the level of a mood-enhancing brain chemical, serotonin.
Hooked: Stevie Lewis, from South Wales, went to see her GP for help with insomnia – but was told she was on the cusp of clinical depression…and given addictive anti-depressants
‘I was completely shocked, not least when he told me I had a chemical imbalance in my brain,’ says Stevie, who now lives in Rogiet, South Wales. ‘I thought very carefully about whether I should take this drug, but in the end I did, because I believed him — he was my doctor.’
However, her shock at being prescribed an antidepressant was nothing compared with the horror that awaited her when she tried to wean herself off paroxetine.
Stevie did not know this was the start of a 20-year battle to extricate herself from the grip of a drug she never needed, during which she would struggle with appalling side-effects that doctors refused to acknowledge were caused by withdrawal, dismissing them as a return of her original symptoms.
Antidepressants, she was told emphatically, weren’t addictive and she could stop taking them whenever she felt like it. But when she tried, she found herself running a gauntlet of horrific side-effects, including extreme anxiety and an irrational terror of everyday acts, objects and places. At times, she felt she might be going mad.
But, as revealed in the Mail today, a major new study suggests that far from losing her mind, Stevie, like millions of patients, was indeed experiencing drug withdrawal.
The review, one of the largest ever carried out of studies investigating the incidence, severity and duration of reactions to antidepressant withdrawal, concludes that the phenomenon is not only real, but ‘more widespread, severe and long-lasting’ than doctors have been led to believe by years of guidance from the National Institute for Health and Care Excellence (NICE).
Stevie endured a 20-year battle to extricate herself from the grip of a drug she never needed
The new research was carried out on behalf of the All-Party Parliamentary Group for Prescribed Drug Dependence, and is published in the journal Addictive Behaviors.
Researchers looked at 23 studies published over the past 20 years and concluded that 56 per cent of all patients on antidepressants suffer withdrawal symptoms, of which 46 per cent said their symptoms were severe.
The authors estimate that in England alone, where one in six adults takes antidepressants, 4 million people may experience symptoms when withdrawing from the drugs, and around 1.8 million may experience these as severe.
They also found that it’s ‘not uncommon for patients to experience symptoms for several weeks, months or longer’, with some having debilitating symptoms for years.
These findings, say the authors, make a nonsense of the NICE guidance, which advises prescribing doctors that while withdrawal symptoms ‘can be severe’, they are ‘usually mild and self-limiting over about one week’.
The current guidance from NICE ‘is not only out of date but doesn’t respect the evidence base’, says James Davies, co-author of the new paper and a reader in medical anthropology and mental health at the University of Roehampton.
And the personal cost to patients is incalculable. Dr Davies suggests the faulty guidance is causing ‘many doctors to misdiagnose withdrawal symptoms, often as relapse, resulting in unnecessary and harmful long-term prescribing’. That’s because when people come off antidepressants and then experience withdrawal, ‘the doctor looks at the NICE guidelines and concludes it can’t be withdrawal’.
Fact: 56 per cent of all patients on anti-depressants suffer withdrawal symptoms – of which 46 per cent said their symptoms were severe
‘Patients are regularly having their withdrawal reactions either denied, ignored or, most concerningly, misdiagnosed as a relapse in their condition, at which point the drugs are reinstated.’
As a consequence, the length of time people are kept on the drugs has doubled since the guidelines were issued in 2004.
Dr Davies suggests that the existing guidelines have contributed to the doubling over the past decade of the number of adults in England on antidepressants — an escalation he describes as nothing less than ‘a public health crisis’.
It’s important to note that many people say these medications have helped them. However, there is no scientific proof that the drugs do so by reversing a ‘chemical imbalance’. There is also evidence that, for most, they’re no more beneficial than placebos.
‘But unlike placebos, they cause side-effects and withdrawal problems,’ says Dr Davies.
The new review of evidence has been submitted to Public Health England, which is conducting a review into prescription pill dependency, set up in January after a campaign backed by the Mail.
It’s also been sent to NICE, whose current guidance is based chiefly on a paper presented at a psychiatric symposium on ‘antidepressant discontinuation syndrome’ held in Phoenix, Arizona, in the U.S. in December 1996, which was funded by drugs company Eli Lilly.
‘The understanding of anti-depressant withdrawal was significantly shaped by that symposium,’ says Dr Davies. But neither that paper nor a later one relied upon by NICE ‘cites a single source that supports the one-week claim’.
‘We’ve looked very thoroughly for the evidence to support the NICE advice, and there isn’t any,’ adds John Read, a professor of clinical psychology at the University of East London and co-author of the new paper. ‘There’s no way they can put out the same advice again once they’ve read this.’
Dr Joanna Moncrieff, a psychiatrist and leading critic of the overuse of antidepressants, welcomes the research and says it’s imperative NICE updates its guidance.
‘This paper shows that official documents and the psychiatric profession have not taken this issue seriously, not put enough effort into researching it and not wanted to face up to the problems that these drugs can cause,’ she says.
‘We’re giving people these drugs for years on end and we haven’t bothered to work out what happens to them, how that affects the body, and what happens when people stop them. That seems just outrageous, a terrible situation.’
Many, she believes, would not start taking antidepressants if they knew the battle they might have to get off them. ‘There are lots of people who contact me who have struggled to get off this medication and feel so angry that this was not highlighted to them.
‘This data is now there, and both doctors and patients need to be much more cautious about starting antidepressants in the first place, because it is quite clear that getting off them is not easy for a substantial number of people.’
Among them Stevie Lewis. She decided to come off paroxetine for the first time after taking it for about five months, but within a few days began to suffer ‘tremendous nausea and dizziness’, which lasted for two weeks.
She had no idea it had anything to do with the drug — neither did her doctor, who diagnosed labyrinthitis, an inner-ear disorder affecting balance. In fact, dizziness is a well-documented side-effect of suddenly stopping antidepressants.
In March 1998, Stevie went reluctantly back on the drug after suffering three miscarriages and the death of her mother. ‘Looking back, all I really needed was grief counselling,’ says Stevie, now 63. ‘It’s absurd, given what I’d gone through, that someone could suggest I was feeling low because of a chemical imbalance in my brain.’
After a year back on paroxetine, Stevie again decided to quit — ‘but this time I just couldn’t do it’.
Every time she tried, a few days later she’d feel highly anxious and tearful, developing insomnia. Her doctor said it was anxiety disorder and told her to stay on the pills.
It was only in 2002, when she made contact with a support group online, that she realised she’d become dependent on the drug and was experiencing withdrawal from it.
‘It had been a shock to be told I was on the edge of a nervous breakdown, and then another to be told I had a chemical imbalance in my brain — now I was a prescription junkie,’ says Stevie.
It would take her 15 years to get free of paroxetine. Time after time, and with the support of a new doctor, she tried tapering her doses, using specially designed syringes to administer ever smaller amounts of paroxetine in liquid form.
‘I’m strong, capable and strong-willed,’ she says. ‘I didn’t want to be taking this stuff, but I couldn’t get off it.’ She’d manage to get below the liquid equivalent of 3.56mg before the withdrawal symptoms kicked in again.
She attributes the break-up of marriage in part to the strain — ‘in 36 hours, I’d change from a normal human being to a crying wreck’.
And when she met a new partner in 2006, Stevie decided to stick with the smallest dose she could manage without triggering withdrawal symptoms. ‘I didn’t want to put the poor man through all that,’ she says.
It was March 2013 before she plucked up the courage to stop even this low dose. She then went through ‘the most terrible withdrawal’, developing a movement disorder so extreme she could barely walk. ‘I also had severe anxiety — terror, really,’ she recalls. ‘Waves of fear would go through me in response to normal, everyday things, such as eating, even smells and sounds set it off.
‘It sounds insane, but I couldn’t even go into my own lounge. Something about that room triggered real fear in me.’
In September 2014 she married again, to Roger, now 75, a retired pensions services manager. They’ve fought the drug together. She describes him simply as ‘a saint’. It took another three more traumatic years before the nightmare began to fade, and another year before she felt completely normal again.
She was finally free of the withdrawal effects about 18 months ago, having spent years battling a drug she believes she should never have been given.
Unsurprisingly, she says she feels ‘badly let down’ by the medical profession, but is focusing her energy on campaigning for awareness and pressing for a change in the NICE guidelines.
A spokesman for NICE told Good Health that its updated guidance had not yet been finalised, and ‘our process for developing and reviewing guidelines includes a thorough search for relevant evidence’. Publication of the updated guidance was ‘not imminent’.
TRYING TO COME OFF THE DRUGS MADE ME SUICIDAL
James Moore, a former high-level civil servant from Bristol, suffered a similar fate
James Moore, a former high-level civil servant from Bristol, knows only too well how ready doctors can be to attribute withdrawal symptoms from coming off antidepressants to the ‘depression’ worsening.
James was prescribed the antidepressant mirtazapine in 2012 after he began having panic attacks. After spending six years on the drug, he has been battling to get off it for the past year.
Mirtazapine is a type of antidepressant known as a noradrenaline and specific serotonergic, thought to work by boosting mood-regulating brain chemicals noradrenaline and serotonin.
James’s problems began when he had to make thousands of people redundant in the department where he worked. It was, he recalls, ‘an extremely pressured time’ — compounded by the fact that he and his wife, Miranda, were juggling caring for their two-year-old.
Then, at the end of 2011, aged 41, ‘all of a sudden I found myself experiencing daily panic attacks at work, panic that was all consuming and unbearable’, he says.
His GP diagnosed anxiety and depression, signed him off work and, in February 2012, prescribed James 15mg mirtazapine. Like Stevie Lewis (see main story), James was told he had a chemical imbalance. When he felt the medication was actually increasing his anxiety — a common side-effect of some antidepressants — he paid to see a psychiatrist privately, who increased his dose to 30mg.
In 2013, after a year of treatment, he told his GP he wanted to stop. ‘His advice was “just take half a tablet for a week, then stop completely”, and that’s what I did,’ James recalls. The result was worse than the problem that had taken him to the doctor in the first place.
‘I ended up barely able to function and losing touch with reality,’ he told Good Health. He had severe insomnia, relentless anxiety, headaches, sweating, shaking spells, dizziness, confusion and agitation. ‘I thought I was becoming seriously ill with an undiagnosed condition.’
Back in the day: James with wife Miranda 2008 in happier times before his depression
To his shock, he also began to have suicidal thoughts.
Repeated attempts to reduce his dose resulted in increasingly worse panic attacks. ‘After only a few days of reducing the dose, I would be bedridden, unable to eat, experiencing relentless anxiety and depression — unable to function at all.’
But instead of identifying withdrawal as the problem, James’s doctor insisted he was experiencing a return of his original symptoms.
James (below) knew that his chronic insomnia and appalling headaches were not part of his original condition, so he went online to find out more — and came across others experiencing the same problems when trying to come off antidepressants.
As he fought to lower his dose, James made several unsuccessful attempts to return to work, but was eventually made redundant on health grounds in 2013.
‘I felt broken and lost, that I would never work again and never contribute to society.
‘For a long time I felt withdrawal was impossible and that I would remain on the drugs for life, but not by choice.’
Fortunately he’s found a supportive GP who is helping him to withdraw slowly, using a liquid form of mirtazapine and special syringes that, unlike pills, allow doses to be tapered by tiny amounts.
He is now down to 40 per cent of his starting dose.
James, who has started a podcast, Let’s Talk Withdrawal, which has been downloaded more than 150,000 times, is grateful that he had the chance to try this method, as many don’t, but adds: ‘It is the most difficult and gruelling thing I have done.’